Month: March 2018

We’re at Euston train station, London. Your pain is so severe we’ve requested assistance to transport us through the bustle. They take one look at you – young, gorgeous – and claim there is no transport available. It will be a struggle for me to carry all our luggage, but we’ll manage because we have no choice. You pull a folding walking stick from your handbag.

We first met at a burlesque class in Liverpool. I’ve never been much of a girl’s girl, so this incredibly hot human not only acknowledging me, but actively pursuing conversation, immediately had my back up. Why was she interested in me? On noting her accent I declared my weakness for Aussie blokes, before lamenting the standard of the 100% of Aussie blokes I had dated (3 – all c*nts, and not in the banterous Aussie sense).

We became friends.

Like me, you’ve probably never heard of EDS. Here’s what the NHS have to say about it:

‘Ehlers–Danlos syndromes (EDS) are a group of geneticconnective tissue disorders… For some, the condition is relatively mild, while for others their symptoms can be disabling. Some of the rare severe types can be life-threatening.’

From my view, it means she breaks like a China doll. This is her again, performing this time:

EDS isn’t particular about when it strikes. A rib can dislocate in a steel-boned corset, or simply during sleep (pssst – she snores really loudly. I was delighted to have finally discovered her flaw).

As an EDS suffer, there are days on end when interaction with the outside world is reduced to Facebook – if you’re lucky enough to have working fingers – or the seagulls who perch at your window. That henna business you wanted to launch and the costumes you planned to sew? Yeah, not gonna happen today.

When doctors hear hooves they think horses, but the rarity of EDS means it’s often misdiagnosed as more obvious conditions – hence EDS sufferers likening themselves to zebras. Image by ChrisMPhotos81.

It’s painful hearing someone you love refer to themselves as a cripple. When pain has driven them to the depths of despair, the words to make it better don’t exist.

This person is, in effect, grieving for the loss of their mobility; this fiercely independent soul, who sometimes can’t even brush her own hair. She recently chopped off that lovely hair.

Feelings about the wheelchair range from embarrassment to relief at simply being able to experience fresh air. I try to make her laugh by singing Weird Al and Limp Bizcitsongs as we whizz along.

My fruity sis: you are so much more than your disability. You are the only person who will watch back-to-back documentaries about serial killers with me, and be enthused about Chilling Photos of Murder Victims Taken by Their Killers. You are humble, loyal and loving. You are someone who will stop the car on a trip back to Oz just to photograph some Big Things for me.

The Big Marlin made my day

It’s hard watching you suffer with your family on the other side of the planet. I hope you know how many people love you on this (admittedly crappier – no Big Things, or Kylie, or blokes with Aussie accents) side just as much.

You may be ashamed of your walking stick, but you are every bit as strong and beautiful as you were without it.